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Mother of baby diagnosed with epilepsy at just a few months old says keto diet has been ‘a lifesaver’

The i 21/04/2021 Claudia Tanner
a man and a woman posing for the camera: Angelique and Darryl Alexander share how a keto diet helped their baby Bella with her epileptic fits (Photo: Angelique Alexander) © Provided by The i Angelique and Darryl Alexander share how a keto diet helped their baby Bella with her epileptic fits (Photo: Angelique Alexander)

First time parents Angelique and Darryl Alexander were alarmed when their new baby girl Bella began having episodes where she would become “absent” at just three-and-a-half months old.

Epileptic seizures in these very young children can be difficult to spot, as they are often subtle, with very few outward signs.

But mother Angelique knew something wasn’t right. “Bella was fine one minute then staring into space the next. It was like she was absent for a few seconds and then she’d twitch. And then she’d engage with me again and smile.

“It took going back and forth to the hospital for a few days for her to be diagnosed. It was a shock and we felt disbelief at first. I’d got in touch with the Epilepsy Society who said that epilepsy was unusual in children of that age.”

In the UK, epilepsy affects around one in every 200 children and young people under 18. It can start at any age including childhood.

Baby Bella was sent home but within 48 hours her parents had to take her back to A&E as the fits got more frequent – up to eight a day. “It was really frightening to see and we felt helpless,” said Angelique, 33, from Beckingham, south east London.

Mum and dad were anxious about their Bella’s future while doctors kept her in hospital for six weeks, testing out different medications in a bid to get the seizures under control.

a group of people posing for the camera: Bella, now three, now typically has one fit a week, unless she is going through a growth spurt when she can have one a day (Photo: Angelique Alexander) © Provided by The i Bella, now three, now typically has one fit a week, unless she is going through a growth spurt when she can have one a day (Photo: Angelique Alexander)

Bella suffers what are called focal seizures, when the infant stops what they are doing and may not be aware of what is going on around them. They may stare, or move their eyes or head to one side. One side of their body might jerk.

She also developed infantile spasms. This is when the baby’s arms fling outward as their knees pull up and their body bends forward. Each spasm lasts for up to a couple of seconds, but they can also happen in clusters. This can be quite distressing for the baby.

Doctors even had to sedate Bella when one of her seizures went on and on. “We were so afraid there could be long-term damage to her brain from having so many seizures,” said Angelique. “A doctor said to us, ‘The child you know today is not the child you will know tomorrow’.”

New diet and fresh hope

Bella was put on four different medications at one point including steroids. “But these heavy duty drugs came with heavy duty side-effects,” said her mother.

The Alexanders’ little girl’s weight tripled and her sleep was hugely disturbed. “She was struggling to sleep because we couldn’t satisfy her need for food and drink all the time.

“We were also warned one of the side-effects of the drugs could be weak muscles and delayed motor skills,” said Angelique.

While the drugs helped somewhat, the doses had to be lowered when the side-effects became too much. Bella’s parents were told her epilepsy was “drug resistant”.

Medics advised them to put their daughter on a ketogenic diet, which involves following a high fat, low carbohydrate, controlled protein plan. Now thanks to her new strict regime, and the right dose of medication, Bella’s seizures occur around once a week, with the odd occasion of a growth spurt where she fits daily. 

“It’s been a life saver,” said Angelique. “We know the diet makes a huge difference because straight away she had no seizures for two weeks and once we took her off the diet for the doctors to assess her and she had lots of seizures again.”

The keto diet: An established treatment for drug resistent epilepsy in children

Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines, usually at least two.

A clinical trial at Great Ormond Street Hospital in 2008 showed that the diet significantly reduced the number of seizures in some children whose seizures did not respond well to drugs. After three months, around four in 10 children who started the diet had the number of their seizures reduced by over half, and were able to reduce their medication. Although not all children had better seizure control, some had other benefits such as increased alertness, awareness and responsiveness.

Other trials have since shown similar results in children. Furthermore, high quality evidence for the effectiveness of dietary treatment for adults is increasing, according to the Epilepsy Society.

While some children can reduce or stop anti-seizure meds often it is a ‘partnership’ between drugs and food to help reduce seizures that works.

Ley Sander, medical director at the Epilepsy Society and professor of neurology at University College London said: “The ketogenic diet has been used successfully in children with epilepsy since the 1920s and it is certainly a treatment option to be considered when seizures remain stubbornly resistant to conventional treatment options. For some children the diet may help to reduce the severity or frequency of seizures.

“The diet works by swapping the food source for fuel to the brain from glucose to ketones. It should only ever be followed with the supervision of an experienced dietitian and careful monitoring will be essential in infants.”

Taking each day as it comes

When Bella’s condition was first diagnosed many nurseries and childminders turned down supporting her parents, simply because they didn’t feel equipped to deal with her seizures.

At ten months old, Bella went to the baby room at Fennies Nurseries in Bromley which caters for children with special needs.

“The chef, Mary, has been amazing there. Everything has to be weighed and prepared from scratch to ensure no infiltration of any ingredient which could trigger Bella out of a state of ketosis.”

Angelique and Darryl will be meeting with the surgeons at Great Ormond Street Hospital for Children soon to discuss possible brain surgery for Bella, who is now three.

Her mother says she and her husband cope by trying to take each day as it comes. “The biggest lessons I’d impart to other parents faced with the challenge we’ve had is to not let fear consume you,” she said.

“Parents easily become obsessed with their limitations, rather than what’s possible – the stigma of having a child with a condition is often worse than the condition itself. Your job as a parent is to support your child in reaching their full potential and to get the right support in place for them to live their best possible life. It can get tough at times but look for ways that help you cope. They do exist.” 

Do you have a real life story? Email claudia.tanner@inews.co.uk.

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